What will the coronavirus vaccine do?
The COVID-19 vaccines are designed to protect you from coronavirus by creating the antibodies and cells required to fight off coronavirus and provide immunity from the virus.
This does not mean you cannot catch or spread the virus, as the vaccines are given in two doses, and the body takes time to create the protection it needs.
There are three vaccines approved for use in the UK: Pfizer/BioNTech mRNA vaccine (16 years and over), Oxford/AstraZeneca vaccine (18 years and over), and Moderna mRNA vaccine (18 years and over).
Will the vaccines be safe for people with muscle-wasting conditions?
Advice from Professor Francesco Muntoni, Professor Ros Quinlivan, Dr Adnan Manzur and Dr Chiara Marini-Bettolo who are four neuromuscular experts leading the paediatric and adult North Star and SMA Reach networks of neuromuscular health professionals:
‘In line with the national and international guidelines, we can advise that the Pfizer/BioNTech, Moderna, and Oxford/AstraZeneca vaccine should be fine to receive for those living with a neuromuscular condition including those on immunosuppression treatments. We therefore encourage you to get vaccinated at your earliest opportunity.
Those on immunosuppression may have a reduced immune response (i.e the vaccine will be less effective) but can still have the vaccine.
In line with recent Medicines and Healthcare products Regulatory Agency (MHRA) guidance people under 30 who have had the first Oxford/AstraZeneca vaccine are advised to take the second one, unless they experienced adverse effects relating to major blood clotting following their first one. People under 30 who have not had their first vaccine will be offered an alternative to the Oxford/sAtraZeneca vaccine.
Please make every effort to avoid exposure to COVID-19. If you feel unwell then please seek a PCR-based test from the national testing centres. If this is positive please let your specialist teams know as soon as you can.
It is important to remember that the Medicines and Healthcare products Regulatory Agency (MHRA) would not have licenced the vaccine if there were any doubts as to its safety.’
There are common side-effects from receiving the COVID-19 vaccine; you can refer to the information provided to you when you received your vaccine, or on the government website. If you have any concerns you are advised to speak with your neuromuscular clinical team. If you have received a COVID-19 vaccination and have experienced side effects, you can report all suspected side effects to the MHRA by using the Coronavirus Yellow Card reporting system.
When will I receive a vaccine?
The Joint Committee on Vaccination and Immunisation (JCVI) is responsible for advising UK health departments on immunisation and for setting the priority order in which people will have access to a COVID-19 vaccine. Their initial guidance, published at the end of September 2020, highlighted age as the likely most important factor in determining priority, and recognised the need for health and social care workers to receive early access too.
Under these initial proposals, it was unlikely that anyone under 65 with a muscle-wasting condition would have been higher than priority group six (out of 11).
We felt this was unfair to the many people living with a muscle-wasting condition classed as clinically extremely vulnerable to COVID-19, who have been shielding for much of the year. So we did the following:
- sought clarity on this, working through the Shielding and High Risk Coalition
- wrote to the JCVI, along with SMA UK, Genetic Alliance UK, Neurological Alliance, Disabled Children’s Partnership, Angelman UK and Contact
- joined a wider group of charities on 18 November 2020 to meet with representatives of Public Health England, MHRA and the Department of Health and Social Care to raise our concerns directly with them.
On 2 December 2020, the JCVI published its final advice on priority groups for coronavirus vaccination. We warmly welcomed news that our concerns were heard and that people classed as clinically extremely vulnerable were moved up the priority order and are now in priority group four. You can see the full guidance here.
The vaccination programme is currently focusing on priority group four, which includes all those 70 years of age and over and clinically extremely vulnerable individuals. If you are in this group you should be contacted automatically, but you can also book an appointment on the NHS website.
Summary of priority groups – relevant for individuals with muscle-wasting conditions
- Priority group 2: This includes paid personal assistants (PAs) and employed carers
- Priority group 4: This includes adults classed as clinically extremely vulnerable. Some people living with a muscle-wasting condition are classed in this way
- Priority group 6: This includes adults who are classed as vulnerable or high risk. “A neurological or muscle wasting condition” is now included in the Government’s clinical condition list for this category. This priority group also includes carers who are in receipt of carers allowance, and an unpaid main carer (this will include family members)
It should be noted that the JCVI has highlighted that many individuals who are clinically extremely vulnerable will have some degree of immunosuppression or be immunocompromised, and may not respond as well to the vaccine. People in this group are advised to continue to follow advice on reducing their risk of infection.
On 29 March government advice was updated for adults living with adults who are immunosuppressed. JCVI recommends that adults living with adults who are immunosuppressed should be prioritised for the COVID-19 vaccine. Find more information on the government website.
Family carers, Personal Assistants (Pas) and care workers
According to government advice paid PAs or carers should contact their local authority to self-identify and make themselves known. By doing this they should be placed into vaccine prioritisation group 2.
Use this online tool to find your local authority.
However, we know that this process is not uniform and some local authorities have made this process more straightforward than others and a next best option will be for the paid PAs or carers to self-identify to their GP.
In terms of family members and unpaid carers of people who are clinically extremely vulnerable, the Department of Health and Social Care has confirmed to the Shielding and High Risk Coalition that “unpaid/informal adult carers” are included in priority group six.
On 7 April following an MHRA report, the JCVI advised that under-30s with no underlying health conditions should be offered an alternative to the AstraZeneca vaccine where available. Those who have already received their first dose of the AstraZeneca jab should continue to be offered a second dose of the same jab. For more information, you can read the JCVI statement and the MHRA press release. Please speak to your doctor about any concerns you may have.
All 16-17-year olds are now eligible to receive the COVID-19 vaccination. If you or your child are in this age group you should be contacted automatically, but you can also book an appointment on the NHS website.
On 20 July, the UK's Joint Committee on Vaccination and Immunisation (JCVI) announced that children aged 12-15 who have a severe neurodisability, Down's syndrome, immunocompromised and those with a profound and multiple learning difficulties will be offered the Pfizer-BioNTech vaccine.
The Government has since released further guidance on the eligibility of those between the ages of 12-15 years old for the COVID-19 vaccination. On 3 August 2021, the Government green book was updated to clarify this will include:
- Neuromuscular conditions that compromise respiratory function. This includes conditions (such as muscular dystrophy) that may affect swallowing and protection of the upper airways, leading to aspiration, and reduce the ability to cough and resulting overall in increased susceptibility to respiratory infections
- Immunosuppression due to disease or treatment, including individuals treated with systemic steroids for more than a month at a dose equivalent to prednisolone at 20mg per day (or for children under 20kg body weight a dose of 1mg/kg or more per day).
- Individuals aged over 12 years who are contacts of immunosuppressed individuals or who expect to share living accommodation on most days (and therefore for whom continuing close contact is unavoidable) with individuals of any age who are immunosuppressed.
We hope this improves clarity around eligibility but please contact your specialist consultant if you are still unsure whether your child is now eligible or if you believe they might be and haven’t been offered the vaccine
On 1 September 2021, the JCVI published advice that people with severely weakened immune systems should have a third vaccine as part of their primary COVID-19 vaccination schedule. This third dose should be offered to people over 12 who were severely immunosuppressed at the time of their first or second dose, including those who are on high doses of steroids.
A third primary dose is an extra ‘top-up’ dose for those who may not have generated a full immune response to the first 2 doses rather than a 'booster' jab. This top up jab should be offered at least 8 weeks after the second dose but with some flexibility to adjust this timing. Decisions on whether the administer this third jab is being decided on a case-by-case basis and your clinical team will contact you if you are eligible.
Advice for Scotland, Wales, and Northern Ireland
This advice is for the UK, however, find here links for the three devolved nation’s individual vaccination information –